"Genius without education is like silver in the mine." Benjamin Franklin

Archive for the month “October, 2012”

This past summer marked a significant milestone in our journey with autism as we passed the 10-year anniversary of our oldest son’s diagnosis. July 2, 2002 is certainly a date that will remain permanently etched in our collective memories as parents. You never forget the day your child is diagnosed with autism. I remember everything about that day – even the pattern on the doctor’s necktie. I kept looking at the necktie instead of directly at the doctor trying to keep from tearing up. I knew I needed to be focused because this was going to be hard and I needed to be strong. Really strong. Looking at his necktie helped keep me calm.

We walked out of Children’s Hospital that day with the same wonderful little boy (now age 13!) we walked in with, and also with the emotional juggernaut of being thrown into a world we’d never navigated – not knowing what was ahead, and yet also knowing that we needed to step up in the biggest possible way to do the best possible job parenting our son.

Looking back there are so many lessons learned – I can’t possibly touch on all of them in one blog post. There are large lessons about patience, endurance, empathy and unconditional love. And smaller lessons, too, like the best way to teach getting dressed or brushing teeth to someone who has a hard time with motor planning.

Recently I came across a wonderful Facebook page written by a woman named Karla. And reading her posts brought to the forefront an issue we grappled with, particularly early on, with our son – the issue of fairness. Because there is a really tricky balance with parenting and autism: how much do you accept the person with autism for who they are and embrace their autism, and how much can/should you help them through therapy or other strategies so that they can learn to navigate a world where most people don’t have autism.

Karla’s ASD Page gives parents and the non-autism world a glimpse inside the thinking of a person with autism. Her poignant and at times biting commentary describes what life is like with autism. She makes a compelling case that life with autism can be a rich and rewarding one, not just second-best or runner-up to a “normal” life. By offering this glimpse inside her world, Karla shows us that an autism life is a viable if not a remarkable thing. Part of the problem as she sees it is moving the non-autism world toward a better understanding of how people with autism view and experience the world. She characterizes her mission as “not fighting autism, but working with it.” Amen.

I highly recommend following Karla’s AD Page on Facebook. She gives people with autism a voice, and those without autism need to listen.

Cowen writes that as a nation we spend less than $1 billion per year on education research. He contends this is a paltry amount when compared to the $140 billion we spend each year on medical research. Cowen aptly views education and medicine as “two sides of the same coin” in that both are services that advance human health and happiness (in the case of medicine) and economic productivity and happiness (in the case of education).

So, Cowen asks – how to explain the 140:1 ratio?

The question generated lots of interesting responses. This list (partially edited) from a reader was particularly thought-provoking:

1. The beneficiaries of education improvements [kids] don’t vote.
2. Medical research is inherently expensive relative to education.
3. Accounting definition confusion (a lot of education and medicine are research and maybe medicine is better accounted for as research).
4. We do research in the practice of education just as in the practice of medicine; we just don’t do as well capturing the data.
5. We don’t see a lot of obvious ways to improve education from education (as opposed to waiting for the internet to save the day which won’t be accounted as education research).
6. We psychologically don’t accept trial-and-error in education, so we build buildings, buy computers, and hire teachers, whereas all medicine is trial-and-error and we oddly accept that is easier.

The beginning of October is an important checkpoint for parents of children with Individualized Education Plans (IEPs). By the time October arrives, your child’s school and teachers have had a month, sometimes more, to get to know your child and to understand how your child functions in the school environment. If your child has an IEP, this also means your school should have that IEP up and running. And as a parent you need to make sure that’s happening.

How? The best place to start is the actual IEP. Parents should go back and conduct a quick review of it. Here are the three main parts to the IEP parents should review as part of this “quick check” exercise:

Annual Goals & Short Term Objectives: these are the academic and functional goals that allow your child to make progress in the general education curriculum. Parents can start by going over the goals with their child. Parents also can review completed work sent home, and ask the teacher(s) for time to review the completed work file at school. Teachers generally either keep a file of completed and/or ongoing work at school, or send it home on a regular basis. Many school districts now offer parent access to online grading so that student work completion and grades can be monitored at home. This is a terrific resource for parents. No matter which method you choose, it’s critical for parents to monitor completed work, and that includes work on IEP goals.

Overall, it’s important for parents to not wait until report card time or IEP progress report updates before doing a quick check on how things are going, as those more formal reports are issued infrequently (usually two or three times per year). IEPs are a complicated machine with many moving parts. For them to work and work well they need to be monitored and checked on a regular basis. As is the case with practically every machine, regular inspection and maintenance is more effective than waiting for a complete breakdown.

Program Accommodations/Modifications and Support for School Personnel – The accommodations/modifications portion of the IEP arguably is the most important. These are the specific tools students with disabilities need to help them make progress in school. Typically they cover areas related to the presentation of materials, timing/scheduling of classwork/homework, and the setting and format of instruction.

To ensure accommodations and modifications are being implemented, parents again can ask their child, their teacher, or review/observe completed work. In my years of representing parents in the special education process, the accommodations/modifications piece frequently is overlooked or misunderstood. At times responsibility for implementation is murky, which can result in accommodations falling off or not being implemented properly or consistently.

Service Matrix – This is the part of the IEP that details the level, frequency and duration of services the child receives, who is responsible for providing the service, and the location for delivery of it. For example, a student who has reading goals might receive instruction from a special education or reading teacher 30 minutes per day, four times per week, in a resource room. Again, now that we have reached October, it is vital for parents to check to make sure those specific services are being delivered as described in the service matrix. Other types of services commonly seen in IEPs include speech therapy, occupational therapy, and behavioral support.

All of the above checks can be accomplished through (an always polite and brief) email to teachers, review of work sent home and possibly a quick visit to school to look at the completed work file. Building in these regular “well-checks” help parents become proactive partners in the IEP process. Most importantly, developing the habit of regular check-ins can help decrease the stress and frustration that often is associated with managing your child’s IEP.